While in college, I fell into a job as a substitute teacher, placed in a special education classroom to cover for a paraprofessional long-term.
My first day, I met a sweet, friendly, sometimes mischievous nine-year-old boy. He was mostly nonverbal. He stimmed. He needed routine. He had significant academic challenges. He avoided eye contact. He had sensory issues. I assumed he was autistic.
“No, just speech delayed,” I was told. “He was evaluated for autism, but they said he’s too loving.”
Too loving?
Those words caused my ears more pain than my younger brother’s Cheerios chewing sounds, and, when I was a kid, nothing bothered my ears as much as his Cheerios chewing sounds.
How could anyone be “too loving” to be Autistic?
How could anyone be “too loving” to be Autistic? Wouldn’t that mean that Autistic people are
therefore NOT loving?
Not long after, I met the world’s most adorable preschooler. He had been diagnosed with Autism before turning three. Nonverbal with Apraxia of Speech. Probably the goofiest, most
playful kid I’ve ever met. One day at school, during indoor recess, he was galloping around the classroom with a broom between his legs, neighing. I made a comment about his great imagination.
A Board Certified Behavior Analyst immediately shot me down.
“He doesn’t have the ability to imagine things,” she said. “He’s just copying what he’s seen
other kids do. Children with Autism can’t pretend play.”
Children with Autism can’t pretend play?
Between this, the “too loving” remark, a comment about how Autistic people aren’t really able
to have friends, and the directive to speak only in short singsong sentences because nonverbal
kids “don’t understand” more than two words said in succession, I was suddenly learning a LOT about Autism.
All of it wrong.
All of it harmful.
Not only for the kids, but for me.
As a worrier (thanks, OCD) I looked at the similarities between kid-me and some of the kids I
was being ‘educated’ about (term used loosely) and… wondered. How did I know I could feel
love? What if what I thought was love wasn’t what other people felt when they said “I love you” at all? Did I really have an overactive imagination as a child, or were my Barbie dolls just reenacting things I’d read or seen on TV?
I’d thought both of my nonverbal godchildren could understand me and that I was understanding them, but what if I was wrong, making assumptions about their needs while talking with too many words?
What if people I thought were my friends were being nice to me out of pity? Maybe I didn’t get friendship at all.
At that time, I had yet to see an autistic protagonist in middle grade or YA lit, so I decided to
create one. It was a very personal project, as most first manuscripts seem to be. I wrote about a tween girl with Aspergers struggling to come to terms with her diagnosis, researching love, and devising a very orderly plan to help her make friends. No one would describe her as “too
loving.” She would never be caught galloping around a classroom, neighing. The most realistic thing about her was her obsessive worrying.
Despite deeply connecting with my character, I was also, in some ways, dehumanizing her. I
was creating what I saw in media, not what I saw in real life. I was creating the character I was told about, the one ‘experts’ insisted was the norm, not the one I knew to exist. She was, in many ways, an Autism stereotype.
I’m glad that story didn’t get published.
(Side Note: don’t get me wrong, there ARE autistic kids who aren’t big on pretend play,
just as there are neurotypical people who are more analytical than imaginative. There
are also autistic people for whom expressing empathy doesn’t come easy and there are
autistic people who, like my first protagonist, are smart and quirky and struggling to
make friends - how many of us can relate to that?! And there are characters like them
who are well-rounded and realistic and wonderful. Basically, there are autistic people
of all kinds, and no one person can represent or speak for an entire community!)
The more Autism representation grew, the happier I was… except that I was seeing the same character type over and over.
The more Autism representation grew, the happier I was… except that I was seeing the same
character type over and over. No imagination. Unable to empathize. Not loving. And while
some of those characters read realistically, when so much of the representation for a certain
group features such similar characters it can unintentionally give people the wrong idea, that
that particular character type represents the entire group.
This is why, in creating Nova, my protagonist in Planet Earth is Blue, I wanted to give readers
someone else entirely. A tween girl who is nonverbal, but doesn’t want people to speak to her
in a two-word singsong. She can’t read chapter books independently, but she enjoys listening to them. She unquestionably loves her big sister more than anyone else in the world, so much it physically hurts to be separated. And she not only has an imagination, she gets lost in it.
I wanted her to be the kid I hadn’t seen in a book yet, the one other Autistic kids needed to see.
I decided she should be obsessed with space travel and looking forward to the Challenger
launch, whereas Kid Me perseverated on the disaster. I gave her some pretty major struggles:
foster care, a missing sister, and a new school, but I also gave her hope: a good foster family,
planetarium access, and new friends. I asked as many people as I could to sensitivity read,
including one kid, one teen, and multiple adults, one of whom was nonverbal as a child. I tried my best to create a well-rounded, nuanced character. I tried not to create a stereotype.
In the time between the first draft of that first manuscript and the publication of Planet Earth is
Blue, so many more middle grade and YA novels have come out featuring characters on the
Autism Spectrum, several of which were written by #ActuallyAutistic authors, which is
awesome. There are more choices now, multiple characters in which Autistic kids might see
themselves.
And I’m so happy that Nova is one of them.
Nicole Panteleakos is an author, playwright, thespian, and Ravenclaw. Her debut novel PLANET EARTH IS BLUE (Wendy Lamb Books) was released on May 14, 2019, with a second middle grade novel to follow. She is represented by agent Katie Grimm at Don Congdon Associates, is currently a #PitchWars mentor for the second time, and belongs to the Society of Children's Book Writers and Illustrators: Metro NY. When not writing, she enjoys theatre, traveling, and talking to her cats like they're people.
You can find her on Twitter @NicWritesBooks or her website: www.nicolepanteleakos.com